A NATIONAL RESOURCECENTER GUIDE FOR FOREARLY HEARING HEARING ASSESSMENT DETECTION& &MANAGEMENT INTERVENTION

eBook Acknowledgements We hope you enjoy this edition of the NCHAM eBook and share your enthusiasm with others.

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arly Hearing Detection and Intervention (EHDI) would not be where it is today without the enthusiastic spirit of sharing exhibited by everyone concerned. For years, we instinctively knew that identifying hearing loss early in life would provide distinct advantages for children. Despite our best efforts, even as recently as the ’70s, the average age of identification of hearing loss remained stubbornly at 2.5 to 4 years. The late Marion Downs and her Junior League volunteers were “beeping babies” in the newborn nursery then and demonstrated that newborn hearing screening was not only possible but necessary. She shared the information at every opportunity and gave us the motivation to improve equipment and techniques so every baby could have the advantage of early identification. Fred Bess and Jack Paradise challenged us to prove the efficacy of newborn hearing screening and early intervention . . . and prove it we did. Dedicated researchers clearly demonstrated the advantages of early identification and intervention—proving once and for all what we all instinctively knew was really the case. In the almost 50 years since those pioneering efforts, we are now screening the vast majority of babies born in this country and are in the process of resolving the issues of loss to follow-up and timely intervention. Many dedicated professionals, as well as families, have shared their expertise and experience with everyone willing to listen. To try to name them all would be impossible, since so many people from many professions and families have contributed to make EHDI what it is today. I would like to think this eBook exemplifies the sharing spirit that has been so pervasive everywhere in the EHDI community. Our authors have enthusiastically shared the fruits of their expertise and experience on all aspects of the topic. As much as possible, we are committed to have this publication reflect the great diversity of information, ideas, and opinions present in the EHDI community. There are very few absolutes in this arena. What works for one program or family may not be appropriate for another. Children and their families are unique. Helping families along their journey into the complex world of the deaf and hard of hearing requires each of us to be knowledgeable, resourceful, open to new ideas, and willing to share our experience. We hope you enjoy this edition of the NCHAM eBook and share your enthusiasm with others. We would appreciate your feedback about what you like, what needs improvement, and any ideas you have regarding additional material you would like to see in the 2016 edition. Special thanks to Dr. Karl White and the entire NCHAM staff and to the newly formed eBook Advisory Board (Diane Behl, Karen Ditty, Todd Houston, Marilyn Sass-Lehrer, and Lucia Sumner) for their assistance and support. Finally, thanks to Deb Risk for her awesome skills in making us all look great in print.

—Les R. Schmeltz, AuD, Editor

NOTE: Development of this eBook was supported in part by the Maternal and Child Health Bureau under Grant Number U52MC043916.

eBook • Acknowledgements/Table of Contents • i

A RESOURCE GUIDE FOR EARLY HEARING DETECTION & INTERVENTION

eBook Table of Contents Section 1-1 to 1-32

Chapter 1 • The Evolution of EHDI: From Concept to Standard of Care Karl R. White, PhD

Section 2-1 to 2-14

Chapter 2 • Newborn Hearing Screening

Section 3-1 to 3-18

Chapter 3 • Tracking, Reporting, & Follow-Up

Randi Winston, AuD, CCC-A; & Karen M. Ditty, AuD

Randi Winston, AuD, CCC-A; & Jeff Hoffman, MS, CCC-A

Section 4-1 to 4-14

Chapter 4 • Utilizing Public Health Partners: Opportunities for Integrating & Improving State EHDI Programs Nicole Brown, MSN, PHN, CPNP; Nicole Brys, MPH; & Kirsten R. Coverstone, AuD

Section 5-1 to 5-20

Chapter 5 • Assessment of the Young Pediatric Patient Diane L. Sabo, PhD

Section 6-1 to 6-12

Chapter 6 • The Etiologies of Childhood Hearing Impairment N. Wendell Todd, MD, MPH

Section 7-1 to 7-8

Chapter 7 • Cytomegalovirus & Hearing Impairment

N. Wendell Todd, MD, MPH; & Faye P. McCollister, EdD

Section 8-1 to 8-8

Chapter 8 • Auditory Neuropathy Spectrum Disorder Gail Padish Clarin, AuD

Section 9-1 to 9-6

Chapter 9 • Children Who Are Deaf/ Hard of Hearing PLUS Susan Wiley, PhD; Rachel St. John, MD, FAAP; Candace Lindow-Davies

eBook • Acknowledgements/Table of Contents • ii

NATIONAL CENTER FOR HEARING ASSESSMENT & MANAGEMENT

NCHAM GOAL: To ensure all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological educational, and medical intervention.

Section 10-1 to 10-20

Chapter 10 • Risk Monitoring for Delayed-Onset Hearing Loss

Jessica Stich-Hennen, AuD, PAS; & Gabriel Anne Bargen, PhD, CCC-A/SLP

Section 11-1 to 11-6

Chapter 11 • Medical Home & EHDI: The Importance of Appropriate & Timely Screening, Diagnosis, Management, & Follow-Up Albert Mehl, MD, & Michelle Esquivel, MPH

Section 12-1 to 12-14

Chapter 12 • Amplification & Hearing Assistive Devices (HAT) Tricia Dabrowski, AuD

Section 13-1 to 13-12 Section 14-1 to 14-6

Chapter 13 • Cochlear Implants Rebekah F. Cunningham, PhD

Chapter 14 • Helping Families Accept Technology Jane R. Madell, PhD

Section 15-1 to 15-10

Chapter 15 • Parent Counseling in the Internet Age: The Rules & Roles Have Changed Les R. Schmeltz, AuD

Section 16-1 to 16-14

Chapter 16 • Audiologists Connecting Families to the EHDI Process Karen M. Ditty, AuD

Section 17-1 to 17-12

Chapter 17 • Family Support & Cultural Competence Janet DesGeorges

Section 18-1 to 18-10

Chapter 18 • Deaf Community Support for Families: The Best of Partnerships

Beth Benedict, PhD; Jodee Crace; Tawny Holmes; Tami Hossler; Gina Oliva, PhD; Barbara Raimondo, Esq; Mary Ann Richmond, MA; Marilyn SassLehrer, PhD; Maryann Swann; & Jaclyn Vincent

Section 19-1 to 19-10

Chapter 19 • Deaf Adults Connecting with Birth to 3 Familie Jodee Crace, MA; & Gloria Nathanson, AuD

eBook • Acknowledgements/Table of Contents • iii

A RESOURCE GUIDE FOR EARLY HEARING DETECTION & INTERVENTION

Section 20-1 to 20-16

Chapter 20 • Secrets for Deaf and Hearing Sibling Success: Giving Them an Early Start for a Lifetime Together Lisa Jacobs, M.Ed; & Sheila Jacobs, LMFT

Section 21-1 to 21-16

Chapter 21 • Components of the Moog Center Early Intervention Program Betsy Moog Brooks, MS, CED, LSLS Cert. AVEd

Section 22-1 to 22-16

Chapter 22 • Early Intervention for Children Birth to 3: Families, Communities, & Communication Marilyn Sass-Lehrer, PhD

Section 23-1 to 23-18

Chapter 23 • Using Telepractice to Improve Outcomes for Children Who Are Deaf or Hard of Hearing & Their Families

K. Todd Houston, PhD, CCC-SLP, LSLS Cert. AVT; Diane Behl, MEd; & Kami Zeckzer Walters, MA

Section 24-1 to 24-12

Chapter 24 • The Role of CulturallyAppropriate Play in Child Development Lucia Quiñonez Summer, MA; & Wendy B. Wieber, MA

Section 25-1 to 25-20

Chapter 25 • Closing the Gap When Working with Spanish-Speaking Populations Lucia Quiñonez Summer, MA

Section 26-1 to 26-32

Chapter 26 • Fostering Resilience in Children Living in Poverty: Effective Practices & Resources for EHDI Professionals

Jenna M. Voss, MA, CED, LSLS Cert. AVEd; & Susan T. Lenihan, PhD, CED

Section 27-1 to 27-12

Chapter 27 • Language Acquisition for the Bilingual Child: A Perspective on Raising Bilingual Children in the U.S.

Lucia Quiñonez Summer, MA

Section 28-1 to 28-6

Chapter 28 • The Role of Educational Audiologists in the EHDI Process Michael Macione, AuD; & Cheryl DeConde Johnson, EdD

eBook • Acknowledgements/Table of Contents • iv

NATIONAL CENTER FOR HEARING ASSESSMENT & MANAGEMENT

Section 29-1 to 29-10

Chapter 29 • The Foundational Role of Advocacy in the Early Intervention & Education Systems

Janet DesGeorges & Cheryl DeConde Johnson, EdD

Section 30-1 to 30-10

Chapter 30 • Early Childhood Hearing Screening: Not Just for Newborns Anymore Lenore Shisler, MS; & William Eiserman, PhD

Section 31-1 to 31-20

Chapter 31 • EHDI Information Management Les R. Schmeltz, AuD; & James Fritzler, BS

Section 32-1 to 32-8

Chapter 32 • Building a Digital Home

Section 33-1 to 33-16

Chapter 33 • Digital & Social Media: Using New Tools to Support the EHDI System

Katherine Christensen, MA

K. Todd Houston, PhD, CCC-SP, LSLS Cert. AVT; & Abby Moleski, BA

Section 34-1 to 34-12

Chapter 34 • Bringing It All Together

Section 35-1 to 35-10

Chapter 35 • Financing & Sustainability

Section 36-1 to 36-12

Chapter 36 • EHDI Grantsmanship 101

Section 37-1 to 37-8

Faye P. McCollister, EdD

Terry E. Foust, AuD; & Karen M. Ditty, AuD Terry E. Foust, AuD

Chapter 37 • Quality Assurance & Improvement Terry E. Foust, AuD

Section 38-1 to 38-16

Chapter 38 • Marketing EHDI

Section 39-1 to 39-10

Chapter 39 • Making the World Accessible for Deaf and Hard-ofHearing Children through Technology

Carrie Balian; & Rachel St. John, MD, FAAP

Jim House & Barbara Raimondo

Section 40-1 to 40-28

Meet the Editor & Authors

eBook • Acknowledgements/Table of Contents • v

A RESOURCE GUIDE FOR EARLY HEARING DETECTION & INTERVENTION

eBook • Acknowledgements/Table of Contents • vi